My dad has been living with stage 4 prostate cancer for 12 years. Up until about 9 months ago ADT was working for him and he maintained a good quality of life.
in January we found out that it had become castrate resistant and there was wide spread spread to his bones, lymph nodes and liver. he started on docetaxel in march. His first scan after 3 rounds showed some shrinking, but mostly it stayed the same/did not grow. Second scan showed the same after the following three rounds, but there was some growth on a lymph nose into the ureter and he now has a nephrostomy bag.
His most recent scan showed he wasn’t responding to the docetaxel anymore and the lesions on his liver grew, as well as new spots there. He will now be switched to carbataxel and carboplatin. The oncologist said if he doesn’t respond to that, then he would have 1 year and if he does respond, he’d have 2 years.
There is also the option to do pluvicto in Montreal (we live in Toronto) but it’s not covered and costs $100 000 to do
My dad is in so much pain if he is not on strong pain meds, he’s short of breath, he sleeps most of the time, and has lost a significant amount of weight. I don’t know how much more treatment he can tolerate. He’s been too emerg at least a dozen times with complications and infections throughout the last 9 months.
He’s being treated at princess margaret hospital in Toronto which is one of the best if not the best place to get treated for cancer in North America so I know he’s in good hands.
But if anyone has similar experiences or treatment options in this situation I’d love to hear about it. I’m not as well versed as others in this group with the medical terminology and it’s a bit overwhelming. TIA
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Fpc123
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I am SO sorry to read about your Dad’s issues. One thing that surprises me is that he was never placed on one of the second generation ADT meds such as Erleada, Xtandi, Zytiga or Nubequa. There is also Provenge, but he may be too far along for that med. There are also clinical trials, has your doctor helped look into any trials? There is also a biologic, Keytruda. The main concern, I would think, is the metastasis to his liver. Please keep in mind that EVERYONE’S body has its own timing WRT to how much time is left. I know medical coverage in Canada is regulated by each province. I would think if a treatment is not available in your province of Ontario, there would be some form of agreement between Ontario and Quèbec. Best of luck, please keep us informed.
Thank you for your response and suggestions. My dad has tried to shield us a lot from his diagnosis and treatment until he couldn’t anymore. I know he said in the past that he was put on a second ADT drug after the first one he was on stopped working. I don’t know which ones he was on but I’m confident they wouldn’t have jumped to chemo until they exhausted the ADT.
I will look into keytruda as well.
What concerns me is how my dad is presenting, he is very unwell day to day. Even being off the docetaxel now for a month or so. I wouldn’t be surprised if he doesn’t make it as long as the doctor said with the way he is. I don’t want to sound hopeless, but I also don’t want him to keep suffering. This disease just takes and takes until there’s nothing left.
Oh I hear you. I have been dealing with this disease for 19 years. Yes, it takes and takes and only gives back with pain and metastases. He is lucky to have you!
I’m used to dealing with it on my own, but thanks for your kind words. I’m pretty sure it’s the lesions on the liver that are giving him so much trouble. My Mom had metastasized liver cancer (obviously not from the prostate). It was quite painful for her. You may need to corner the doctor and have him/her explain what meds he has been on, what is planned for the future. And what can be done for pain management?
Thank you, 19 years is a very long time to live with this disease. I hope you’re not suffering too much and are feeling as well as you can be.
And yes, the prognosis with the liver metastases is grim. I’m planning to go to his next appt with his oncologist to ask more questions. He’s connected with a pain doctor, and he’s going to be getting stronger meds.
Sorry just saw your reply. You know this bitch is on my bones and luckily I have a high pain threshold. My only unfortunate side effect is that docetaxel killed my balance.
At this stage a pain doctor is very important. Just keep him comfortable.
There is a trial he can join in Toronto at Sunnybrook Research Institute: clinicaltrials.gov/study/NC... It is for the treatment of patients with later-line mCRPC who have failed one prior new hormonal agent (NHA) and one or two prior taxanes. The drug is opevesostat.
Speak to his Medical Onc about trials he/she recommends. My husband is in a clinical trial at Sunnybrook for BRCA2 gene mutation. Wishing your dad the best with this awful disease.
Honestly, I don't know much about immunotherapy. My husband has Stage 4 with a few bone mets, so I know there is no cure. Hopefully he will be around for several more years.
You should bring this trial up when you see the oncologist and mention that you are interested to join. He may not be aware of this particular trial.
The link I provided has a phone number to call if you want to get into this trial. You could call that and ask what the investigator at Sunnybrook recommends you to do.
Thanks so much. I will cal. However I noticed that to qualify you can have no more than 6 docetaxel cycles and he’s had 8. I will still look into it and bring it up with his oncologist Tuesday
First of all I would not mention that. In the Merck press release they write "one or two prior taxanes", this means a treatment with several cycles of docetaxel and a treatment with several cycles of cabazitaxel. Therefore I think the 8 cycles do not really matter.
I'm sorry I used the word "trivial" but I meant it as trivial compared to all of the issues that you detailed in your post (above) regarding your dear Dad. Of course his age is important to you and to his fight against those tiny bastards. Keep fighting!!!
God Bless you and God Bless your Dad.
P.s. It may be a good idea to copy the pertinent details in you post and paste them to his Bio. It helps your Dad/you and helps us too. Thank You!!!
You may want to look into places that are much more affordable. There were a number of people traveling internationally to Australia, Europe and India. The India hospital was very affordable, I don't want to misspeak but three maybe four years ago a number of people on this group went there. The woman doctor was trained in Germany, the cost was about $10,000 for treatment and hotel if I remember correctly. You would fly to India and the hospital would transport you, you stayed in a wonderful hotel. Treatment was top notch.
I've been reading these posts less frequently over the past few years so no keeping up with people who may have done this more recently.
I don't know how useful this is but DeepSeek responded with this after I asked what to do with the liver metastasis?
DeepSeek said
Managing liver metastases in advanced prostate cancer requires a tailored approach, especially after exhausting standard therapies. Below is a detailed guide to address liver involvement, including emerging treatments and supportive strategies:
- **Lu-177 PSMA**: Approved but delayed in Canada. Push for **Special Access Program (SAP)** or consider accessing it abroad (e.g., Germany, U.S.).
- **Actinium-225 PSMA**: A more potent alpha-emitter than Lu-177, effective in small trials for aggressive metastases. Available in trials (e.g., **NCT04597411**).
- **Ra-223 (Xofigo)**: If bone metastases coexist, it may help but is less effective for liver disease. Use cautiously with anemia.
#### **B. Targeted Therapies**
- **PARP Inhibitors (Olaparib, Rucaparib)**: If *BRCA1/2*, *ATM*, or other DNA repair mutations are present (confirm via tumor or germline testing).
- **AKT Inhibitors (Ipatasertib)**: For PTEN-loss tumors (trial-dependent).
- **PSMA-Targeted Therapies**:
- **BiTEs (AMG 160)**: Binds PSMA and CD3 to recruit T cells against metastases.
- **PSMA-CAR-T Cells**: Experimental but showing promise in early trials.
#### **C. Chemotherapy Combinations**
- **Docetaxel + Carboplatin**: May help if liver metastases are platinum-sensitive.
- **Cabazitaxel**: Second-line chemo if docetaxel was used earlier.
---
### **2. Local Liver-Directed Therapies**
#### **A. Radiation**
- **Stereotactic Body Radiation Therapy (SBRT)**: For oligometastatic liver lesions (≤5 tumors). Can delay progression and relieve symptoms.
- **Selective Internal Radiation Therapy (SIRT/Y-90)**: Delivers radiation directly to liver tumors via microspheres. Used more in colorectal cancer but may be considered off-label.
#### **B. Ablation/Embolization**
- **Radiofrequency Ablation (RFA) or Microwave Ablation**: For small, accessible liver tumors.
- **Transarterial Chemoembolization (TACE)**: Delivers chemo directly to liver tumors. Limited evidence in prostate cancer but occasionally used.
#### **C. Surgery**
- Rarely an option, but resection may be considered for isolated liver metastases if other systemic therapies control disease elsewhere.
---
### **3. Immunotherapy Options**
- **Pembrolizumab (Keytruda)**: If tumors are MSI-high/dMMR (rare in prostate cancer, but check biomarkers).
- **Tumor-Agnostic Trials**: For *BRCA* or other mutations (e.g., **NIRA-PARPi trial**).
- **Hepatic-Directed Trials**: e.g., **TAR-200 (gemcitabine-releasing device)** for liver mets.
---
### **6. Integrative Strategies**
- **Exercise**: Light resistance training to combat muscle wasting (improves fatigue and QoL).
- **Diet**: High-calorie shakes (e.g., Ensure), omega-3s, and protein to counter cachexia.
- **Mental Health**: Mindfulness, counseling, or peer groups (e.g., **Prostate Cancer Canada Network**).
---
### **Key Steps to Take Now**
1. **Push for Lu-177 via SAP** or seek treatment abroad (e.g., **Clinic Düsseldorf** in Germany).
2. **Biomarker Testing**: Confirm MSI, *BRCA*, PTEN, or PSMA expression to guide therapy.
3. **Consult a Liver Specialist**: Interventional radiologist or hepatobiliary oncologist for local therapies.
4. **Palliative Care Referral**: For symptom management and advanced care planning.
---
### **Final Note**
While liver metastases are challenging, emerging therapies like Ac-225 PSMA, BiTEs, and SBRT offer hope. Advocate aggressively for trials, collaborate with your care team on liver-directed strategies, and prioritize quality of life. You’re not alone in this—many are fighting alongside you.
I’m truly sorry to hear about your situation, and I commend your strength in seeking options. Here’s a structured approach to consider, focusing on both immediate and longer-term strategies:
### 1. **Expedite Access to Lu-177 PSMA Therapy**
- **Compassionate Use/Special Access Programs (SAP):** In Canada, SAPs allow access to approved but unavailable drugs under specific circumstances. Ask your oncologist to apply for this through Health Canada’s SAP.
- **Provincial Advocacy:** Contact your provincial health ministry or cancer agency (e.g., BC Cancer, Cancer Care Ontario) to inquire about timelines for Lu-177 rollout. Escalate through patient advocacy groups (e.g., Prostate Cancer Canada Network) for support.
### 2. **Clinical Trials Beyond Lu-177**
- **PARP Inhibitors (e.g., olaparib, rucaparib):** These are effective if you have BRCA1/2 or other DNA repair mutations. Confirm genetic testing (tumor or germline) has been done.
- **PSMA-Targeted CAR-T or BiTE Therapies:** Trials like AMG 160 (BiTE) or CAR-T cells targeting PSMA are emerging options.
- **Other Radiopharmaceuticals:** Explore trials for Actinium-225 PSMA (more potent than Lu-177) or combinations with immunotherapy (e.g., pembrolizumab).
### 3. **Address Anemia and Weakness**
- **Anemia Management:**
- **Erythropoiesis-Stimulating Agents (ESAs):** Epoetin alfa/darbepoetin may help, though risks/benefits need discussion.
- **Iron Infusions/Transfusions:** If anemia is severe, short-term transfusions could stabilize you.
- **Physical and Nutritional Support:**
- **Palliative Care Referral:** Focuses on symptom control, fatigue, and quality of life.
- **Dietitian/Physical Therapy:** Counteract muscle wasting with tailored nutrition/exercise plans.
### 4. **Explore International Options**
- **Lu-177 Abroad:** Countries like Germany, Australia, or the U.S. offer PSMA therapy. Costs may be high, but some centers have expanded access programs. Organizations like MyMedTravel may assist with logistics.
### 5. **Second Opinions**
- **Canadian Expertise:** Seek referrals to major centers (e.g., Princess Margaret Cancer Centre, BC Cancer).
- **Global Consultations:** Consider virtual consults with specialists at institutions like MD Anderson or Johns Hopkins for trial/access insights.
### 6. **Supportive Care**
- **Palliative Care:** Focuses on pain, fatigue, and emotional health, improving daily function even while pursuing treatment.
- **Mental Health Support:** Counseling or support groups (e.g., Prostate Cancer Foundation community forums) can help maintain resilience.
### 7. **Advocacy and Urgency**
- **Escalate Delays:** Write to your MP or provincial health minister to highlight delays in Lu-177 access. Patient stories often catalyze policy action.
- **Crowdfunding:** If seeking treatment abroad, platforms like GoFundMe can help offset costs.
### Key Takeaways:
- **Lu-177 Access:** Push for SAP/compassionate use and provincial advocacy.
- **Symptom Management:** Integrate palliative care early to address anemia, weakness, and emotional strain.
Stay proactive with your care team, and lean on advocacy networks for logistical support. While there’s no definitive “silver bullet,” combining emerging therapies, symptom management, and relentless advocacy may open pathways. You’re not alone in this fight.
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